About Mom-of-Two

My daughter tested positive on labs including endomysial antibody, which was 4X the norm. She was also deficient in vitamin D. Surprisingly, the pediatric GI called and said no damage was seen on endoscopy. We were shocked. Even more shocked when he told me keep her diet the same, retest in 6 months. She has "latent" celiac. I now looking back have no clue what the point of retesting was, she was positive on celiac specific labs. Did he think that would disappear?
We got a second opinion. Doc said no way, she is celiac. He drew me a very simple picture on a notepad, of the small intestine and how large it really is (most people don't realize the surface area you are taking samples from). So, 1 inch lower from the testing site, could have been severe damage. He had no doubt that there WAS damage because she was endomysial antibody + and that correlates to gut inflammation.
6 months later, reversed symptoms, 8 lbs gained, (absorption!) vitamin D TRIPLED. Enough said. He believes + labs plus resolution of symptoms on the diet = diagnosis. In her case, I also was diagnosed 6 months prior (why we had her tested) so he also had family history there.

I will tell you this~ I learned I had celiac a few years ago and had my two children tested. The first pediatric GI tested them both for tTG only. My daughter was very high (80 I think), I was crushed when I got the phone call. They said they would be doing an endoscopy, to "confirm". I hated every moment of the process because she had never had ANY surgery or anesthesia, and I had awful anxiety over the whole thing. I will say, it was not bad. Brief, no problems, SHE did great, I just didn't! she ate an omelet that night and woke up normally for school next morning. HOWEVER, her biopsy did not show celiac. I was frustrated when the GI called and said "she may have latent celiac, but we will retest in 6-12 months and she should keep eating normal diet". I hung up the phone and said to my husband, we are going to see someone else.
New GI did more tests, she was positive for endomysial antibody, low in vitamin D, and we discussed her joint pain and occasional reflux, in addition to me having celiac disease myself. He met with me after the results and said "I don't believe in latent, just because the biopsy did not show damage doesn't mean it isn't there~ He drew me a picture, which showed the intestines and how large it really is. If there isn't damage in one spot, there could be one inch lower or two inches to the left. He had no doubt that she had internal damage, because he said when you are positive for endomysial antibody, your intestines are absolutely damaged. We were 100% gluten free after that. All symptoms disappeared (things we didn't know were "symptoms"), at 6 month follow up all labs were normal, vitamin D had more than doubled, and endomysial antibody NEGATIVE. The GI was very pleased and said "that's how it's supposed to work". Take out the offending gluten and body works again.
Times are changing. Many docs are now taking positive labs as a diagnosis.

Exactly!! I'm struggling with purposely feeding him crap to test him
Ok, I think I'll let him eat a bit more on a more regular basis, over next week or two, and go ahead with testing again- if this impaction issue continues, or he continues with tummy pain after getting negative labs, we may then consider eliminating gluten all together and see how he reacts.
My pedi is certain that he just has to get used to going regularly, and easily, hence the Miralax, but I don't want him to stay on it or depend on it to go, I really want to try more natural methods, if I could just get the stubborn kid to eat leafy greens and high fiber stuff!!

I don't know, my GI tested everything thyroid including Hashi's, every test for everything has been normal but I haven't lost an ounce since being diagnosed 18 months ago and being strictly gluten-free.
I heard so much about the amount of weight I would lose, I was praying it was the one positive in the whole crappy diagnosis!
Just letting you know you're not alone, I don't get it either!

So all.....his X-ray a week ago showed impacted stool, basically a colon full of stuck poop she had us do Miralax for 3 days, and then has us on a maintenance dose right now until we get him going more regularly. He's gone a total of 5 times since starting the Miralax, and seems to feel a lot of relief. She agreed that we should do a few more celiac labs, since he never had a full panel.
She ordered the DGP tests and a couple other things including iron, because he eats no meat. Thing is, trying to feed him a bit more gluten till we do the labs--- what would you suggest time and quantity wise for accurate testing? He DOES already eat it, so we are not starting a challenge from scratch, just upping what he eats now.
As an example, we don't have gluten in the house except a few things- he eats Honey Nut Cheerios and I have MiniWheats, his Cliff Bars are not really gluteny, but are made with regular oats, I bought some goldfish for snacks on the go, regular pretzels, he eats normally when out to eat, and will eat kindergarten snacks (which always have gluten!!) starting daily next week. I know bread is the best way to incorporate it, is it worth bringing bread back into my house with two celiacs? Should I get a box of mini donuts and let him eat a couple a day, that doesn't sound healthy I have some frozen macaroni and cheese he eats 1-2 times a week, I even bought some of those Kraff microwave ones for lunch, just trying to sneak it into him!
I get conflicting info. Both my pedi and GI said he is eating enough, he would have antibodies. My own GI told me nope, he could be testing negatively because he is eating gluten light.
What do y'all suggest?

I never thought I would be going out to buy gluteney foods and load my kid up on them LOL :-) he's gonna have fun with this experiment!
I was thinking a month also, especially since he will be eating daily snacks at kindergarten as well. I really wish I could've figured this out prior to school starting! If gluten does end up being his problem, I sure hate to make him feel miserable just as he starts school!
The pediatrician is running celiac screen which includes the DGP tests he hasn't been tested for yet. And I think it runs tTG which he's been negative on thus far, but maybe increasing his gluten intake will give us a more accurate result. She is testing him for all sorts of inflammation stuff too- sed rate, ANA, CRP, metabolic panel, CBC+diff, amylase and lipase, iron +TIBC, ferritin.
I AGREE------ and so does my pediatrician, what causes a kid to get fecal impaction!??!!!

I can't speak to this exactly, we are on this journey with our younger kiddo, BUT I can tell you that my daughter had blood work while eating gluten, and was re- tested by a different GI after 2 weeks of gluten free at HOME. Her antibodies had already gone down by half. So, I do think in children, they do heal and reverse quite quickly!

Well, X-ray yesterday revealed he has a bad impaction- basically colon full of poop, up to his rib cage
She has us doing Miralax 3x a day for the next 3 days, then a daily maintenance dose for awhile until we get results of some testing.
She has labs for iron, couple other things, and the other missing components of the celiac panel - he tested normal on tTG
and the EMA screening the GI did, but never had the DGP ones done so I asked and she agreed that it's time to get to the bottom
of this constipation issue. She feels a great deal of it is behavioral, holding it because it is painful etc and also just diet- he eats fruits
but basically only veggie is salad (romaine lettuce). He is very picky, and eats no fiber/iron rich grains at home since we have no gluten
in the house!
He's been on probiotics several years. None of the fiber we've tried helps.
At this point we are fairly certain he will either be positive on these tests or never test positive but feel better with diet change.
He just in the past 3 weeks starts complaining of wrists hurting, and begun cracking them, which was my daughter's only symptom!
Now to decide how long to wait- because he does eat gluten, not starting from scratch, how long to "gluten load" him in an effort to get accurate test results? He eats snacks that have gluten but not daily, he has normal food at restaurants and parties, play dates, outings,
etc and we do have a couple gluteny cereals which he eats with plastic spoon/paper bowl. I don't want to bring bread in the house and can't
cook regular pasta, so just try to achieve in snacks?

Well, we are seeing his pediatrician tomorrow, but GI can't see him until Oct 7. Tomorrow his pediatrician is suggesting a tummy X-ray because she suspects he has impaction, he is also being iron tested because he won't eat meat, and doesn't eat a lot of iron rich foods. I am now totally convinced he needs to be off gluten because he has joint pain in his wrists and has been complaining of headaches 2-3 times a week.
Going to see what the pediatrician will do for us tomorrow

Many people do NOT have ANY nutritional deficiencies at time of diagnosis--- this is a GOOD thing. Changing your diet now, you should have an easier time keeping your nutrient levels adequate, and getting that villi damage healed. I was told I was likely celiac my whole life, and had no malabsorption of nutrients, never been thin, and didn't have "classic" symptoms,
Good luck!

We have no problem making him fully gluten-free (he eats none at home anyway), we just want to make sure he doesn't have actual celiac- so we know if we have the same contamination concerns.
I'm going to follow up, if this continues with the constipation/tummy aches I may wait a few months, since he will be eating gluten snacks in Kindergarten starting in the fall, he may be easier to test. I still negative, I suppose I'll give my suspicious mind a rest

I SO understand how you feel. Even after my daughter tested + on tTG and EMA tests, because her biopsy was normal, they still said we had two options: 1) gluten free diet and retest in 6 months or 2) continue eating as normal and retest in 6 months or sooner if symptoms arise. Given that I myself have celiac too, and her body is clearly having an autoimmune response, as seen in her blood work, why in my right mind would I sit around and wait for my kid to have "symptoms"? If he is not having stomach problems now, why wait around till he does!? Count it as a blessing, honestly that is the best way to move forward.
You can check their website, and put your zip in to see where they carry it- I get mine 25 mins away at a natural foods store where they carry tons of gluten-free items. You will find Udi's or Rudi's bread easily, and if you enjoy it, great- but I was shocked the difference when I found Canyon Bakehouse. I buy 6-8 loaves at a time (approx. $5 per loaf) and pull out a loaf at a time. It makes great sandwiches, toast, or grilled cheese
http://canyonglutenfree.com/
I will say that in one year, my daughter has not had one single issue, from cross contamination or anything, not a single stomach ache or problem, I too feared the worst. But we've found that so long as we ask questions and do the extra work, we can both eat and live fairly normally. We recently took a 2 week vacation, and probably ate out 6-8 times (more than we have total since getting our diagnosis). She has never had any issue and we ask tons of questions, seek out places with dedicated menus and have had great service and care from managers, etc. it gets easier. We don't eat out often at home, because that risk is there, and I do try to simply avoid it, but for nice occasions, it has been no problem.
We had no problem in school last year, you will encounter numerous birthday treats, parties and special treats that seem to come up weekly! I send a ziplock bag at start of year with safe candy (DumDums, Hershey's, York Peppermint Patties) in our kit along with an "emergency" few gluten-free granola/protein bars in the event that your child drops part of his lunch, etc since ordering is no longer an option.
Because they heat lunches for the kids, I send pasta, chicken, leftover spaghetti, you name it- maybe a PB sandwich 1-2 times a week or apples w/PB, fresh fruits and veggies, popcorn, string cheese, greek yogurt tubes that I freeze, gluten-free pretzels for crunch, they make some more kid friendly crackers now- Crunchmaster makes some cheese crisp ones, Van's has a nice cheddar one.
Keep in contact with the teacher, my daughter's teacher would email me with a question- for example when they made a craft with marshmallows and she wanted to be sure she could eat the ones remaining, or if she knew ahead of time someone was bringing in a birthday treat or occasion. On party days, I tried to send in the similar equivalent, so our class did crunchy, fruit and sweet- I would do popcorn, apples, and a cupcake for example (which I keep frozen and ready for such days).
We have had NO negative experiences. It gets easier!!!!!

Myself and my 9 year old both have celiac. My 5 year old has tested normal with tTG test twice, and has a normal EMA screen several months ago. NOT a full panel. He continues with constipation and frequent tummy aches, but the pediatric GI we see feels this is just more diet and behavioral. (Holding it)
Should I push for more tests- the DGP tests on him? If so, how long do I need to up his intake to get accurate results? We are gluten free at home but he does eat gluten when we go places. He has MiniWheats a few times a week (paper bowl and disposable spoon per his doc to increase fiber. So he gets pretty regular amounts of gluten but not daily pieces of bread. BUT I want accurate results so I can quit this constant wondering.
What do you suggest I do next?

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!